Barriers Continue To Limit Patient Access to Electronic Health Data

by Kate Ackerman, iHealthBeat Managing Editor

Recent studies have found that patients are interested in accessing and sharing their health information online. The technology to make this possible exists, and several health systems are leading the way.

Just this week, Kaiser Permanente announced a new no-cost Android application that will allow about nine million Kaiser members to use their mobile phones to access diagnostic information, email their physicians, obtain lab results and order prescription refills. Meanwhile, the Department of Veterans Affairs' Blue Button initiative -- which allows veterans to download their health care claims data from VA's MyHealtheVet website -- has been expanded to members of TRICARE's military health plan and Medicare beneficiaries. It soon will be available to federal workers, retirees and their families.

John Sharp -- manager of Research Informatics in the Quantitative Health Sciences department at the Cleveland Clinic -- said, "There is a growing demand for this data by patients," but he added that not all patients "are aware of this as even a possibility."

Jennifer Keelan -- assistant professor at the University of Toronto's Dalla Lana School of Public Health -- said, "I think the changing culture of consumer expectations is really driving this," adding, "Consumers are simultaneously expecting more access to information because they are being expected to make a larger share of the decisions about their own health."

Keelan added that the demand for access to health information also is being driven by "the fact that very few of us now have one general god-like figure for medicine in our lives directing care. More often, we're the ones directing care among a group of very complicated, very specialized and highly trained health care professionals."

Observers say that providing patients with better access to their health information will lead to improvements in both the quality and coordination of care. Giving patients easy access to information to help them better monitor their health could lead to earlier interventions and ultimately reduce costs.

Sharp said, "Those with chronic or life-threatening illness have the greatest potential for benefit, but even healthy patients want to know their health risks and how to manage a healthy lifestyle."

While no longer a novel idea, widespread patient access to their electronic health information is still far from a reality.


In a recent Journal of the American Medical Informatics Association perspective, Keelan and her co-authors outlined four main challenges to sharing electronic health records with patients:

  • Cost and security concerns;
  • Problems in assigning responsibilities and rights among the various players;
  • Liability issues; and
  • Tensions between flexible access to data and flexible access to physicians.

Sharp said that funding for such initiatives "is significant but can be supported through the [Office of the National Coordinator for Health IT's] incentive program." He also noted that even when a health care organization uses an EHR vendor that offers a personal health record product or enables the Blue Button, "the health system needs an experienced team to implement, support and manage user accounts."

Another hurdle is doctors themselves. Not all health care providers are on board with giving patients online access to their health information.

Sharp said that "many [health care providers] are still concerned about releasing health information, concerned that patients will not understand, will make more phone calls or will panic at test results."

Keelan said that health care professionals often express "'sky is falling' fears ... about what patients would do if they saw their data." She explained that there's this idea that "the patient sees a biopsy result that says 'probably cancer' and jumps off a bridge."

She said that health care providers also are worried about adding "another burden in their recordkeeping." She added, "We have to re-train physicians on how they record keep and document information so it can be shared with patients, and that's going to have to require a huge shift in the language and the subculture of how medical information is handled and exchanged."

Another challenge is "redefining the role that patients and their providers are playing," Keelan said. She asked: If patients are given more access to their health information, are they now more responsible for their health care decisionmaking?

Keelan said, "There's still a large cohort of patients who, just because they're given access to all this information, they actually don't want to have the burden of thinking and making a decision about a particular course of action. They just want to be advised."

She noted that different patients and different scenarios may require different levels of access.

Overcoming Barriers

Sharp identified several steps for overcoming some of the barriers to giving patients electronic access to their health data, including:

  • Educating providers about how patients want to be partners in their care;
  • Providing adequate funding to implement the software and support it from an IT standpoint;
  • Learning from successful models, like Kaiser and VA;
  • Demanding good products from vendors; and
  • Providing leadership to make these initiatives successful and involving patients in project design and how data are presented.

Keelan noted, "We actually don't have a huge amount of empirical research showing benefit yet, so I think we've got a lot of work to do in terms of figuring out what works and why it works and for what patient populations it works for." She said, "The burden really falls on researchers" to study pilot projects and identify best practices in providing patients with electronic access to their health records.

Keelan said that such research "could go a long way in allaying some of the fears that the provider community has," adding, "I think that if the medical profession as a whole ... sees that there are real advances in outcomes that are measurable for their patients, I think they will embrace the technology."

Looking Forward

Sharp said that he expects adoption of PHRs and patient access to health data to grow over the next five years as new EHR systems are implemented as part of the meaningful use incentive program.

Keelan said, "If I had a crystal ball, I would say that more likely than not the Facebook generation will ... change expectations of accessibility," adding, "They're going to want the same type of convenience and accessibility to their data that they have for their financial information, and I think they'll be willing to trade off risks of security breaches in order to have that flexibility and have that access."

She also predicted that physicians will start writing medical records differently, noting, "We're going to meet the public halfway so people can understand the medical technical language."

However, Sharp said that "100% adoption should not be the goal." Instead, "providers should use PHRs strategically, educating those with chronic illnesses and those at risk for readmission."

He said, "If PHRs, patient social networks and mobile apps converge into systems [that] enable the promotion of health and management of chronic disease, strategic growth in PHR adoption will grow."

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